Obviously not all decisions made for people with disabilities have been bad ones, any more than all decisions made for people of color have been bad ones. Decisions for life, quality of life, increased autonomy and equality tend to be good ones; decisions that aim toward death, decreased quality of life to make things “easier” for everyone else, decreased autonomy, and inequality tend to be bad ones. (I don’t think there is any disagreement which category lynching falls into; there is disagreement, valid or not, about which category this DNR order falls into.)

Me, I don’t know enough to properly look at this from a disability rights perspective, so I’m looking at it more from youth rights, which I’m more familiar with, and leaving off the factoring in of cerebral palsy for the final reckoning. And from that perspective, if she’s not old enough (…I don’t know how “severe cerebral palsy” affects mental processes, but I think the reasoning still stands) to decide for herself whether or not she wants to *die* over experiencing the discomfort of resuscitation, or to weigh the risks of trying resuscitation but dying anyway versus certainly dying versus possibly living–the assumption should be “life”. Parent(s)/guardian(s) have rights, but deciding for death for their sentient offspring before they can choose for themselves isn’t one of them. And if for one reason or another said sentient offspring will never be mentally capable of making these kind of decisions, well, then it still shouldn’t be entirely up to the parent(s)/guardian(s) to decide that, oh, if she could decide for herself, “she’d rather die” than be resuscitated. At that point, it’s better to rely on her long-term mental health than what her caretakers want, which is by no means inherently “what’s best for her”.

And that’s without knowing if Katie’s able (mentally, I mean, because if I understand the discussion right we’re talking about how the law should be, not what it is) to make this sort of decision for herself. If she’s mentally on par with most second-graders I know, or for that matter most preschoolers (kids are able to do pretty astounding things pretty early on), she could understand the idea of death enough to decide how she feels about all this–especially if, like one person posited, she’s been resuscitated before enough to know how she feels about that experience, too. At the very least she could overrule her parents’ decision, even if you don’t think she could really agree to DNR.

….Oh, and second or third or fourth or whatever the thanks, Kay, for the Disability 101. It is nice to be smacked upside the head with another knapsack of privilege I should keep track of, although I know you’ve no obligation to do the smacking. Especially since I know you’ve no obligation to do the smacking.

Daisy Writes:
So, you get to leapfrog over the entire subject of the intrinsic value of disabled people’s lives!?! Pretty good trick!

“I’d like to address whether lynching REALLY WORKS and not the morality of it.”

Sigh. nice ad hom, though.

Look, they’re different issues. If the DNR is necessary–note the “if,” please, before you also refer to this post as “garbage”–then, well, it should be effective.

Similarly, people who address the way the DNR looks are, whether or not they state as much, also addressing whether it works. You can’t easily separate how it looks from what it does, which is what I was trying to explain.

So it makes no sense to complain both about whether it should be in force at all, and about how it looks. If it should be in force, then you need to have it look as it should, in order to work. And the question of whether the DNR should exist at all is too serious (I hope) to be driven by how it looks.

As for the lynching thing, here’s why it’s an bad analogy:
ALL lynchings were (are) wrong.
SOME decisions made on behalf of disabled people are wrong. Not all of them.

Maybe this was a bad decision. But you are making a ridiculous statement if you imply that it is always inappropriate to make a medical decision (including a DNR) on someone else’s behalf, whether that person is disabled or not. And that is what your lynching analogy is saying, and that is part of why is it being badly received.

seriously. And you know: 101, whatever, and this is true of EVERY damn “controversial” topic that comes up, here or elsewhere, whether it be trans-related, race-related, immigration, sex work, war, hijab, class issues, reproductive rights…-every- time. The reason it goes beyond “because they’re people” is because there is a core belief that in fact “those people,” whoever “those people” are, are -not- entirely three-dimensional people, and/or for some reason can’t be trusted to speak for themselves, make their own decisions, understand their own experience. They need spokespersons; they need interpreters; they need saviors, defenders for and against, anthropologists, analysis, discipline, Henry Higginses…something. Always, it’s something.

“The people! The things!”

“The things are also people.”

“The people!…the…also people…”

“101″ anything is understanding that the “also people” are people. Simple, but apparently beyond a lot of…people… a lot of the time.

Thanks, Lisa. You’re among a small number of bloggers who seem to really be dedicated to making an effort to cross all boundaries and make connections between experiences and write about those connections. That’s not an easy thing to do, and not something I always do well myself. It requires a great willingness to fumble it badly sometimes that I’m not always up to myself. It’s appreciated.

I agree with Kay here. Lisa, you’re really awesome at that. I second the kudos.

Fumbling is too easy, and I’ve already done it a couple of times. I just hope people keep saying “hey, you screwed up” so I can fix it when it happens. :)

As for the connections, intersections made the idea of oppression comprehensible for me - not just my own, but the oppression others deal with. I had trouble admitting that what I experienced was oppression beyond just sexism and homophobia, so I didn’t really pay much attention beyond those two. But when I read Amanda Baggs, BFP, Nezua, and others, I kept coming across painfully similar experiences - and it all made sense where before it hadn’t.

We’ll have to disagree, though I’m certainly not the only one making the claims I’ve made. And others that I linked to at the top of the post actually made them before me.

For many other posts I’ve written critiquing mainstream media, you can find “media” in the index at my blog. I’m fairly confident that as a body of work they point out consistent problems in the portrayal of disability issues and disabled persons.

I agree with you that the “no beeping rule” implies the parents do not want machines around Katie. And here we mean medical machines specifically, don’t we? We’re separating them out from other computers and phones and tvs and anything else electronic that might also beep. See how that fact gets elided in the very way the rule is presented?

Also note that like other machines, medical ones do not beep “for no reason.” They beep for very specific purposes and are designed to communicate things people using them would want and need to know.

That said, it was one brief mention at the end of the article. There might be a whole lot more to it than that, it could have meant something different than what either of us are guessing, it could have just been a good sound bite and not even true for all we know.

So, when you use this single statement as the point on which the essay turns, it loses me. That is all I’m saying.

Here’s where the experience of ableism, both culturally systemic and personal, kicks in. The mention of the “no beeping rule” was no more brief than any of the other anecdotes about home life with the Jones family or school life for Katie. The details are what paint the picture. And I believe everyone here has agreed some vital info is missing from a complete picture. But Penny, Trin, L., Alison, Daisy and I are making a big deal out of the “no beeping rule” because we understand in disability/ableism terms what it really means. We understand it the same way a person of color understands racism when they hear it even though it is not an outright slur. The “no beeping rule” has a cutesy name for the children, perhaps, but what it means is directly linked to the fact that these parents have decided on a DNR order.

Banning medical equipment from their home and not wanting life-saving measures performed on their child fits in perfectly with the overwhelming cultural message we hear every day about “not wanting to live on machines” or “pulling the plug. It fits with how strangers approach many of us disabled on the street and tell us to our faces “I wouldn’t want to live if I was like you.” That this message was reinforced from inside the Jones’ daily routine with a falsehood about the inability to have “group hugs” while using a machine demonstrates how the cultural ableist message persists in the face of truth. (Much like myths about race.)

If we were discussing a story about someone who was violently anti-immigration and the article reflected that with a family exchange that included a falsehood about immigration, both the exchange and the context of its reinforcement with falsehoods would be relevant to the whole article. The context would tell you that their beliefs were not based all on fact. This would be important whether you agreed with their basic beliefs or not.

Also, I’d guess that most of the people reading this are not familiar with the disability rights perspective or with your previous writings. How familiar should an audience be before they can respond critically to your writing?

Addressing outlier and also the more general topic of Disability101:

When I started this permanent gig about a month ago, one of the other writers here asked if I wanted to restrict commenting on my disability posts to those who are disability-rights-friendly in the same way this blog has “feminists only” threads. I declined that mainly because I think we need to have these messy discussions where die-hard disability activists mix it up with the well-meaning, the asses, the clueless, the confused, the earnest and everybody else. I don’t think that’s just because the disability activists have so much to teach everyone else, either, though I do believe that we do. To suss out what ableism means when we haven’t been taught to see it the way we have racism or sexism we need to see each other’s turns of phrase and botches and work through what things mean, see the patterns illuminated, discover our own biases, doubts, fears, etc.

There’s at least one post I’ve put off writing because this meta-conversation needed to happen first. (I wasn’t actually forward-thinking enough to understand completely why I put that post off until writing this today, but I did instinctively know it was too explosive a topic for me to cool-headedly moderate comments on until I’d established myself here a bit better and decided where to draw various lines in the sand or whatever.)

There’s not so much moderation required at my own little blog. Traffic is low compared to here and people self-select as mostly sympathetic to the basic premises of disability rights. Those who fear or hate the disabled rarely comment or rarely return if they do. That’s a large part of why I took Amp up on the offer to blog here. I love talking amongst ourselves, the small group of bloggers on disability. That’s my community. But we could do that forever and not have our voices heard in the larger community we all have to live in.

Sure, I’m tired of Disability 101, and I reserve the right to say here at some future date that “I am done explaining X or Y, go educate yourself and then come back and we’ll try again.” But I don’t think that’s reasonable or useful at this point in my tenure here or at this point in public awareness about ableism or disability rights. Not useful from me, at any rate, as the one with some basic moderation power over discussion. I’m happy Daisy is fiercely demonstrating that there is a body of knowledge, both experiential and theoretical, out there backing my basic viewpoint up. I hope people look into it. And I hope people feel these discussions are open for all reasonable exchanges in the meantime.

Is this the woman you’re thinking of? She suffocated her three-year old daughter to spare her from growing up autistic.

And of course there’s Ashley X and Katie Thorpe, when it comes to using medical care and unnecessary medical procedures against children with disabilities.

Well, yes, of course because:
Lynching = unjustifiable death of black person.
DNR = unjustifiable death of nonterminal disabled person.
Black person’s right to life > disabled person’s right to life.

It all makes sense, now.

I think one of the assumptions Chris is going under is that all parent’s will always do what’s best for their child. And I think this stems from not knowing the history of how some parents have historically denied the rights of their disabled child by denying medical services or outright killing them (see Latimer). Does someone have a quick list of these? Like that woman who killed her autistic kid? Or some of the other examples of DNRs and denied health care of disabled kids by parents? Ashley Treatment? Maybe that would help.

It may well be that the parents have good intentions within their own prejudicial framework of disability (and the medical profession’s rampant support of that prejudice), but historically, there have been many cases where parent’s good intentions did not respect the rights and humanity of their disabled child. I would not make a final decision about this family’s frame of reference without first having a lot more information, but I think that the information given causes legitimate suspicion in the context of the historical framework.

When I read this article, I didn’t see a mother trying to spare her child the trauma of experiencing resuscitation, I saw the same kind of rationalization that leads parents to kill their disabled children. I don’t think Katie’s parents are on the verge of murdering her, but requesting that life-saving medical treatments be withheld to “spare her that experience,” is the same kind of thinking to a different degree.

All of this stuff can’t be magicked away by pointing out that the article is supposedly really about how the school is handling the DNR order when the DNR order is itself so problematic, when publicizing it for all to see is so problematic, when denying her medical treatment that could improve her life because they see life support machinery as shameful or inconvenient.

There’s real history, real precedent here. This same story has played out over and over again. When it does, PWD suffer for it.

As for Katie’s thoughts, I would agree with you “if” the article were merely a human-interest story about Katie and her family. What are her thoughts? I wish we knew. I don’t want to say that they’re not relevant, but from a strictly editorial point of view about “the topic of the story”, I have to say that they’re not.

Wow. What can you say to something like this? “We are going to kill someone, but their opinion of that isn’t important.”

Obviously, Chris believes some people are more equal than others.

(The analogy that others have made between this DNR and its execution to lynching and its “effectiveness” is odious and below the belt.)

Prove it.

If you can’t prove it, I find for the analogy.

Since this article that we agree is “not about Katie” is based so much on her and the response (or intended lack of response) the worsening medical situation, there should have been more of a presentation of exactly what is worsening there. That issue was skirted.

Wait, so now you are saying Kay DID prove her point about the article?

Dayum, I’m so confused.

My mother, may her disability-activist soul rest in peace, would have said you were on the honor roll at Smartass U.

What gave me away, anyway?

You freely said you hadn’t read anything Kay wrote, and seemed pretty proud of yourself for that. I can’t imagine a disabled person being so dismissive of a disability activist, but hey, shows what I know.

Nezua calls this particular rhetorical approach The Appeal to Melanin–in your case, the Appeal to Disability.

As for my use of the word tragedy, see the post above. If you don’t think a little girl’s pending death is a tragedy in the making, then I guess there’s no point to this little discussion of ours.

Um, I was talking about your choice of language. Disability activists have said they do not like the poster-child connotations of the word TRAGEDY and believe that it derails discussion of rights into emotional appeals …that does not objectively mean that something is or is not a tragedy. I gave the example of Obama being constantly called “articulate”–of course he is articulate as hell–that is not the point. The point is that black activists have educated us about the history (and underlying assumptions) of that word as used by whites about blacks. If you are a progressive white person worth your salt, you will quit using the word and find others. I haven’t found it too awful difficult.

As for activists of any stripe, I don’t give two hoots what their hot buttons are; you and they can activate away for all I care.

I don’t know what Kay has been doing or for how long.

Nezua calls this one Wite Disdain and breaks it down:

• “Run along now with your niche complaint.”
• “I dont care because it doesn’t affect me.”
• “We’ll get to that later, when we fix the important things.”

And then, you actually continue the Wite Magik Attax, with no sense of shame at all. You say, without any irony–

If you want to take the chip off your shoulder and talk to me rationally, then perhaps I can learn something from you.

Nezua calls that one The Drowning Maestro and specifically mentions that dreaded “chip on the shoulder”… wow, it’s like Nezua is writing Chris’ whole reply! Gollee, how on earth did THAT happen????

Doesn’t it embarrass you at all to act like one of the Wite Magik Attax people? Isn’t it rather like looking in the mirror and finding out you are a cartoon character?

Thanks, Lisa. You’re among a small number of bloggers who seem to really be dedicated to making an effort to cross all boundaries and make connections between experiences and write about those connections. That’s not an easy thing to do, and not something I always do well myself. It requires a great willingness to fumble it badly sometimes that I’m not always up to myself. It’s appreciated.

The beeping is a good example. People here seem to have trouble understanding about the “no beep” thing. If we assume that the information in the article is accurate and not a misquote, it sounds as if the family was intimidated or otherwise didn’t like all of the beeping machines that the girl used in the hospital and has thus avoided them in the home.

When I read this, and I read it before I read Kay’s commentary, this sent off HUGE red flags to me. It has to do with the history of disabled people being denied equipment and healthcare treatments because the equipment was thought to be inherently bad or shameful or somehow using them is a fate worse than death. This is the “confined to a wheelchair” response to a wheelchair that offers freedom. Or the “L., do you HAVE to take your white cane? Everyone stares at us when you do.” or the “I would NEVER want to live on tubes,” when many people happily use various “tubes” to promote their health and freedom. Disabled people look upon the technology and equipment that helps them function as liberating; not shameful.

So, okay. Maybe if you are not familiar with disability 101, you never thought of it that way before. So you may ask, “Kay, I don’t understand what you are saying about the beeping and why it bothers you so much.” But instead, it seems like people want to argue that the ‘no beeping’ thing–typically a HUGE red flag when able-bodied people want to deny the disabled access to healthcare and equipment, is nothing. And that Kay doesn’t actually have a valid and supportive point in bringing it up.

Sure, you could argue that the newspaper is wrong about the beeping, but we don’t have any evidence of that. The evidence we do have, a dislike of medical equipment and innaccurate information about said medical equipment (no group hugs), shows a very likely prejudice against disability on the part of the parents. This leads to serious doubts about the ethics of their decision to put a DNR on the child.

I don’t know if this is the best analogy (maybe someone has a better one), but its just like ignoring that some man says he goes home every night and watches “g*rls g*ne w*ld” because he says, “but I really love and respect women!” Or a person who says, “I’m not prejudice, but two black people and a jew go into a bar…” Someone might say, oh he’s not prejudice! He said so, didn’t he? Besides, who doesn’t like a good black/jew joke? Kay has pointed out possible supporting evidence about her suspicion that the DNR is possibly not warranted by pointing to the “no beeping” rule as a sign of prejudice. Chris refuses to see this as credible evidence because of a lack of understanding of the ways in which Disability discrimination shows itself.

The big thing is that people have an idea of what “care” means that doesn’t really pan out as they intend it. There is an idea that because the intentions are (or are stated to be — I’ve seen a lot of stuff where I doubt that the people’s motivations really were positive) caring, what’s happening must be good, must be positive, must be respectful, must be what’s best.

http://trinityva.livejournal.com/617296.html
http://www.normemma.com/arstairs.htm

The thing is that they TELL you these things are care, and they pat themselves on the back for giving you “care” and call one another “brave” and “warriors” and “inspiring” and it’s always about them

and how much they care.

enough to let you die.

and if you wonder how that’s care you’re ungrateful. combative. you’re sometimes even called “noncompliant.”

How would it be if rapists could say “she was noncompliant” and everyone could just nod, shake their heads, wonder at those silly women and how foolishly they spook?

These things *have a context*. If you’ve lived in that context you know what it is.

Re: Doctor’s approval of a DNR
All I know is what was in the article:
“A Do Not Resuscitate order is a doctor’s directive, issued with the consent of the family, that cardiopulmonary resuscitation will not be used if the patient suffers from heart or breathing problems. It can also prohibit using such devices as a defibrillator or an intubation tube.”

I understand your concern with the missing and incomplete “background” to the story, which is, of course, Katie’s life and medical condition. Since this article that we agree is “not about Katie” is based so much on her and the response (or intended lack of response) the worsening medical situation, there should have been more of a presentation of exactly what is worsening there. That issue was skirted. I don’t know if it was in deference to Katie’s privacy (which seems moot at this point, doesn’t it?) or the family’s decision not to share that, or simply an editorial decision by the Trib. As a parent myself, I took it more or less on faith that the family feel that they have done all that can reasonably be done for their little girl, that they love her, and that it’s time to let nature take its course.

That’s why I thought that the focus on “no beeps” (both by the author of the article and then by you, because you jumped on that remark) were off the mark. The parents have obtained a DNR for their little girl. THAT is a tragedy! Now the story is about how that should be handled by the school and town services, when the situation arises.

The point that others have made about “visibility” is an excellent one, I think. I had originally thought that the DNR order made prominently visible on the wheelchair was disrespectful and borderline obscene. But I understand differently now: If it’s not obvious to a newcomer to the scene who doesn’t know, then it would be totally ineffective. Perhaps there’s a better way to handle that, too.

As for Katie’s thoughts, I would agree with you “if” the article were merely a human-interest story about Katie and her family. What are her thoughts? I wish we knew. I don’t want to say that they’re not relevant, but from a strictly editorial point of view about “the topic of the story”, I have to say that they’re not. But only in that narrow context. Otherwise, of course, Katie’s thoughts are the only ones that really matter, aren’t they?

(The analogy that others have made between this DNR and its execution to lynching and its “effectiveness” is odious and below the belt.)